any new ideas

[Spazy]

I am now officially not sleeping. Are there any new trials that I could look into?

[Hidden]

HI and I'm sorry to hear you're not sleeping. Insomnia, for me, has always been the worst aspect of RLS.

I'm not entirely clear what you're asking. If you're asking if there have been any clinical trials to test any treatments specifically for insomnia then I'm only aware of one recently.

This was a trial of medical cannabis and I believe it was fairly conclusive that it does work. Unfortunately unless you suffer MS or some forms of epilepsy it's unlikely that you'd ever get a prescription for that.

It does suggest however, as also many people claim, cannabis can help with insomnia.

Living in the US it may be easier for you to explore the possibilties of cannabis legally.

That's it as far as I know.

I do wonder however what exactly you mean by "not sleeping" as knowing more detail about this might suggest some ideas.

I also wonder what medications you're currently taking as I note that 2 years ago you were taking 1800mg gabapentin after stopping pramipexole.

I also wonder if you suffer any health conditions, including mental health issues and if you are taking any medications for any of these. These may be aggravating your RLS.

There are several variations of not sleeping, one is where you can't get to sleep - delayed sleeping. Another is where you wake up after only a short time - early waking. Another is where you sleep off and on - disturbed sleeping, finally not sleeping at all.

You could be suffering one of these or any combination, but different patterns, suggest different causes.

If your insomnia is caused by your RLS alone then it suggests that it's poorly controlled. What medication you're taking, what dose and when you take it are all factors in insomnia due to RLS.

RLS is a physical condition as insomnia can also be, but there are psychologcal elements to it, which if addressed can improve matters.

One thing of interest may be a thread recently posted in this forum about placebos. I know from person al experience that placebos can be affective with pain, anxiety and sleep. A particularly good placebo, I've found, is a confection called a "Smartie" which is, I believe, a UK version of M&Ms. One should do it, if you eat too many the sugar will trigger your RLS.

However, if you offer more detail, perhaps a better solution might become apparent.

[Joolsg in reply to Hidden]

P.S Manerva- not a single person with MS has been prescribed medical cannabis yet. I’m on a waiting list & even if successful will have to pay £150 a month. MS society is campaigning but doubt anything will happen any time soon. Sativex ( cannabis spray with zero THC) is available for us but only for severe spasms where other meds have failed.

[Hidden in reply to Joolsg]

I had heard that it was difficult, if not impossible to get a precription for MS and for epilepsy.

I am sorry to hear this because it is licensed. It shows it's not sufficent just to campaign to get a medication licensed, yoiu have to carry on to get it actually prescribed.

What hope then of gettiing prescription for RLS. Have to carry on with the home grown.

[Joolsg]

What meds are you currently taking?

[Hidden]

I take a little bite of a nicotine replacement tab and RLS just disappears

[Hidden]

I was on fluoxetine for a long time. I read many articles and they said this drug can cause or make RLS worse. I went to the doctor that prescribed this medication and was weaned off of it. (It helped) I have also found out OTC sleep products can make RLS worse including types of antihistamines. I still don’t sleep very well but stopping these drugs have helped. I am now on Pramipexole, which is a Parkinson’s medication. This drug does seem to help.

What is interesting, is that the doctor that prescribed the Pramipexole also prescribed the fluoxetine (Prozac). You would have thought she would have known that the fluoxetine causes RLS. Needless to say, I have found a new primary physician.

Sometimes what helps is sitting in a very warm bathtub. When I am having a terrible night I will do this and it has helped me.

My suggestion is look at all the medications you are on and check if they can cause or make RLS worse.

[Joolsg in reply to Hidden]

Pramipexole is no longer first line treatment for RLS so be careful and do not increase the dose. If it stops working- reduce slowly & switch to a better alternative.

[Hidden in reply to Hidden]

The doctor that prescribed you the prozac without knowing that it makes RLS worse, has prescribed pramipexole apparently without warning you of the complications of dopamine agonists. See Jools response.

That's probably because your Dr doesn't know that either.

Sedating antihistamines also make RLS worse as they reduce dopamine levels.

I can say that I had mild RLS until I had a course of Citalopram another SSRI antidepressant like prozac. It triggered my RLS and I was then prescribed pramipexole. I became so dependent on this that I was constantly scared of missing a dose or taking it too late as the consequences were dire.

After a while it starts to fail and increasing the dose can make things worse, not better. After eight years I switched to an alternative and weaned off the pramiopexole. I now hardly ever have any RLS symptoms.

I believe if a) I'd never taken the Citalopram which caused severe RLS and b) never started on pramipexole I would not have suffered what I suffered for those eight years.

[Hidden in reply to Hidden]

I agree, I should never have been prescribed the Prozac. After talking with several of this doctor’s patients I found out she prescribes Prozac to a lot of women. I find that very odd. One doctor that I had gone to for another reason asked me why I was taking it, and I really didn’t know why. As I said before, I have a new primary at this time and will not go back to her.

[Hidden in reply to Hidden]

A good idea, don't go back to that primary.

It's not uncommon for Drs to prescribe something without telling you about side effects and complications, but to expect you to take something without even explaining why is almost abusive!

[HilsK in reply to Hidden]

I have been on Pramipexole for 22 years .i have been trying to get to see a neurologist for 4 years ... multiple cancelled appointments and now Covid mean I have only just seen one. I have been screaming augmentation at my DR in all this time. One told me it was all in my brain. It had become body wide .. all skeletal muscles involved in random spasming and shaking with the awful sensation that goes with it. I am at the same time a Carer for my husband who has dementia .. this is without any help. I am so exhausted and my mental health has got to the point where I feel suicidal. The neurologist has made a treatment plan which he hasn’t yet sent to the surgery ... they tried to put me on antidepressants which of course make matters much worse. They have absolutely no clue about what is happening to me and trivialise it. I have never know so much pain and I cannot go on like this .... trying to be a Carer is the worst possible scenario you can imagine and NO. ONE listens. I do not know what to do ...

[Hidden in reply to HilsK]

I have read what you say and appreciate your frustration. I will think about what you've written and get back to you later.

[Hidden in reply to HilsK]

In summary I suggest the following.

Wean off the pramipexole and stop taking it. Refuce by 44ug everty 3 - 4 weeks

Ask your GP for either gabapentin or pregabalin.

Take an oral iron supplement, gentle iron every other day.

Consider taking magnesium vitamin B12 and D supplments.

Ask for an opiate, codeine or tramadol to help with withdrawal effects

[HilsK in reply to Hidden]

Thank you Manerva. The augmentation effects have hospitalised me twice I Have been in so much pain. I must get off this horrendous drug safely.

[Hidden]

I agree. But I should have been more proactive in my care. I guess I got a little lazy.